I suspect this may be too esoteric or scattered or specific, but I’m putting it here in the hopes that it will strike a chord with some readers. My writing style is shifting as I find it harder to hold the thread of long passages of text and I’ve decided to give in to that and see where it takes me. If you’re in the mood to read something more conventional, JKP has posted an excerpt from my book in which I explain why it’s called Nerdy, Shy and Socially Inappropriate.
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I’m in an in-between place, much like the one I found myself in after learning more about Asperger’s and before getting diagnosed. If you’ve been there, you’re probably familiar with the swirl of feelings in-between places evoke–certainty and hope shot through with doubt, fear, and confusion. Determination, undercut or perhaps fueled by intermittent anger and frustration.
The in-between places are hard. We no longer quite feel like the person we were; we’re not yet the person who will emerge on the other side of this no man’s land.
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Liminal (adjective):
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of or relating to a transitional or initial stage of a process.
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occupying a position at, or on both sides of, a boundary or threshold.
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The spaces between, the grey areas, have always fascinated me. When I wrote fiction, I was endlessly picking at the in-between places. Perhaps because I find them so hard to stomach in real life.
I’m not good with uncertainty. Literally, my number one reason for seeking out an autism diagnosis was peace of mind. I needed to know if I was making it all up in my head / imagining myself into a neurology / selling myself a bill of goods because I’d grown weary of looking for answers.
To put my mind at ease, someone who ‘knew about these things’ would have to validate my suspicions in a way that I couldn’t do for myself. That piece of paper, I figured, would get me over the hump and out of the in-between place of “this feels right but what if . . . ?”
It did, though not quite in the way I expected. It was more anti-climax than epiphany. But it was a path to closure and closure was what I needed to get on with life.
*
I understand that having access to a paper diagnosis is a privilege. At least, I thought I did. Maybe I’d overestimated the depth of my understanding.
Once again I find myself stuck in an in-between place, this time with no immediate possibility of a diagnosis. Months of making the rounds of doctors and tests have told me only what is not the cause of my language difficulties.
I’m left with three possibilities:
- this is temporary and will resolve itself when it’s good and ready
- this is something serious and the evidence that would allow a diagnosis is years away
- this is my new normal and I should learn to live with it
Which is a bit like being told, “there’s probably nothing serious causing that limp but if there is, we’ll know for sure when your leg falls off.”
*
If I’m being honest, I need to admit that number 3 on that list is true regardless of whether I’ve won the prize behind door number 1 or door number 2. Months going on years is too long a period to simply keep hoping tomorrow will magically be different.
It dawned on my last weekend that one way out of the in-between place is acknowledging that where I am now is my new normal. That is a hard conclusion to arrive at when the new normal appears so much shabbier and rundown than the old normal.
But there is no practical reward for living in an imaginary future. It only fuels that awful feeling of suspended reality and in-between-ness.
*
Things I am learning to hold close and be with:
- uncertainty
- anger
- sadness
- imperfection
- fear
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In the in-between place, it helps to keep reminding myself that it’s okay.
It’s okay to feel certain and uncertain, often at the same time. Feeling one doesn’t make the other untrue.
It’s okay to doubt myself, to feel insecure and crazy at times. Like the anger, fear, sadness and frustration, I can feel those things, move on when I’m ready, come back to them when I have to.
It’s okay to not have an answer. There are more unknowns in the universe than there are knowns. See also: the unknown unknown.
It’s okay to change. 2500 years ago Heraclitus said, “You could not step twice into the same river” and there’s a reason people still quote him. We are constantly changing, like it or not, accept it or not, realize it or not.
It’s okay to ask for validation and it’s also okay if not everyone I share my experience with offers validation. Ultimately, I have to punch my own ticket.
It’s okay to feel like I’m the only one who knows my experience and, at the same time, it’s okay to identify with the experiences of others, even if I don’t share their diagnosis yet or never will. Adapt what is useful applies to more than just kung fu.
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Liminal late 19th century: from Latin limen, limin- ‘threshold’ + -al.
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I’ve spent the last six months looking for the threshold of this in-between space. Surprisingly, I found it in the confirmation that there would be no answer, not now.
Maybe that’s a kind of resignation. Not a giving up, but a giving in, a practical acknowledgement of reality. I’m done struggling with this thing for now. There is a kind of tired relief–a quiet sense of peace–in acceptance and I’m ready to embrace that.
For now, and for as long as I can keep hold of it.
Musings of an Aspie 
Neat post. I’ve never heard of the word “liminal” before so I’ve both learned something just now and had enough of a reaction that I thought I’d chime in on this post.
Now that I realise what liminal is I guess I’ve been fascinated with it too since this appears to be where life actually happens. Everything is change. So much so that change itself becomes the proverbial constant in life (and infinity starts here). I like definitions and predictable outcomes. I don’t depend on them but like to be aware of what factors will contribute to those outcomes and that rules-based existence. It’s not the rules themselves I take comfort in but an awareness of what factors will determine which outcomes. I find myself anxious at the point where this liminal event is occuring. Where the event is new in its entirety and those defnitions, measures, and outcomes are yet to be defined. I find it hard to see myself in the context of the event. This becomes the trigger for something to become unproductive at best. Sometimes it becomes the governor determining if I even expose myself to that event in the first place.
What’s so fascinating is how others navigate this period of change. At least for me.
I like your distinction between the rules and contributing factors. That feels like a nuance that’s often missed when we talk about why we sometimes struggle with change.
I usually lurk, but had to comment this time. I also am in an uncertain place, for very different reasons; however, this post really spoke to me. It’s a reminder to me that whatever is going on is what must be dealt with right now, and raging against the universe’s perceived unfairness is not productive or helpful.
Thank you for your lovely post. I wish you all the best.
I’m glad you delurked today. 🙂 Yeah. life really isn’t fair, as hard as that can be to accept at times.
I hope that whatever it is you’re grappling with resolves soon.
It was refreshing to read your post. I have been in between for a number of years. As an introvert and an uber sensitive person who doesn’t like change much at all, it has been wearing on my spirit. At my age (61) I don’t know how many changes I have left. After a long time being depressed, I’d like to do something and there is no “something” that I can both do and that is available. Thank you for writing.
That sounds like a hard place to be and also a hard place to get out of. I don’t have any great words of wisdom but I really feel for you.
This is beautifully written and very moving.
I think I understand exactly what you’re saying even though I dont share the “thing” it’s about. I think this inbetweeness and finding a normal goes along with self acceptance. I’m learning that isn’t a static state, or a one off job. It takes constant work as things change, in either big or small ways, in situation or feelings about it. I think it’s harder when we dont want the “thing” and it feels like it’s diminishing us. Changes for the better can surprisingly take as much work as changes for the worse. I’m better than I was, but this is still horrible. Why isn’t it improving faster? Lack of diagnosis or a diagnosis of elimination is very difficult to live with. Personally there is fear around it incase I’m missing something that could be cured, but I could tear myself apart looking for answers that might not exist. I’m choosing to accept and try to adapt to each change. I feel for you and I really hope it will get easier or more comfortable for you.
Self-acceptance is definitely a moving target! I think part of what’s making this so hard is that it’s turning my self-concept upside down and in a way that makes me angry and sad.
I know what you mean about that fear of having missed something and also of wondering if the cost of continuing to search is worth it. Such a hard line to walk. I hope that you continue moving toward acceptance and are able to find adaptations that work for you.
I guess for me, the question of “things that can be medically cured” has been eliminated and regardless of what the cause of this is, the only “cure” is continuing to find new accommodations to adapt to the changes as they appear. That makes acceptance somewhat easier because at least I feel like I’m kind of doing what I need to be doing, even in the absence of a clear answer.
Thank you for your post. If this turns out to be your new normal, it’s a bit like my mother’s frustration when she had to begin catheterizing my dad every day. Almost daily she would call, in tears about it. A few years later it was my turn to help him with his daily needs. I had to follow the same advice I gave her then: redefine the meaning of the word normal.
I have found that both professionally and personally, as I grow older I am continually redefining normal. But I do understand some of your situation, having an adult aspie son who is also bipolar. He broke his leg in March, had surgery and missed 5 months of work and sports. Thanks to your post I see his frustrations must have come from the “in between” state he was in.
Thank you do much for your blog.
You make a good point about “normal” shifting as we age. That’s definitely inevitable and I think something we can all relate once we hit middle age and beyond. I hope your son is recovering. That sounds like a tough injury to cope with.
Cynthia it is a privilege to read your posts. This one is particularly moving and inspiring! Thank you for sharing the wondrous person that you are with all of us.
Thank you! 🙂
This is very beautiful. I have been in a similar place with a certain health issue…There are two supports that have been invaluable to me and I will suggest them in case they can help you:
-Cognitive therapy to deal with the pain and anxiety that comes along with these spaces. Takes the pain of it down at least 30%
– Naturopathy- Funny enough naturopathy has been more accurate than doctors who always say “give it time and see if it gets worse” Instead I have had stuff to take, aids and brainstorming that HAVE improved my life. My original problem has improved but there is still some of it left in my life…so its not always a cure, but other parts of me have been healed in turn helping me deal with this…plus, it makes me realize there are so many different approaches to health and my way of being is allowed to have support and not be written off or waited till dooms day hits. Naturopath helps with the in-between if you find a good one and is worth every penny.
This is beautiful and many of us do have to traverse through this at one point so you giving these words is a stunning gift! Thank you.
Thank you for the suggestions. It’s good to hear that you’re improving and feeling like you can actively do something – that’s huge. The frustration that comes with “nothing you can do about that” is so self-defeating and discouraging.
I’ve been trying all sorts of lifestyle changes over the past few months. Some have helped. (I’m now mostly gluten free and my energy levels have evened out thanks to that, though I’m still fantastically autistic.) Some had no effect. But it’s definitely something I’ll continue exploring.
P.S. I was wondering if you ever get these statements and how you feel about them? I also referenced two of your posts ( and linked them) in this:
http://worldwecreate.blogspot.ca/2014/09/doesnt-everyone-have-little-autism-in.html
I left you a comment – great post!
thanks! I finally wrote a response as I was gone all afternoon…thanks for yours:)
Great post. I find myself in a liminal space right now, although for different reasons. It’s almost like being in limbo. Hopefully the fog will pass.
Thanks – hopefully we’ll both come out on the other side soonish. 🙂
wow –
“I’m in an in-between place, much like the one I found myself in after learning more about Asperger’s and before getting diagnosed. If you’ve been there, you’re probably familiar with the swirl of feelings in-between places evoke–certainty and hope shot through with doubt, fear, and confusion. Determination, undercut or perhaps fueled by intermittent anger and frustration.
The in-between places are hard. We no longer quite feel like the person we were; we’re not yet the person who will emerge on the other side of this no man’s land.”
^
That is where I am right now.
It is like you were peering into a portion of my mind with those sentences. I not only am going to be tested soon, but I recently moved physically to a new place. I may have attempted to do much too much all at once. But, I was so uncomfortable with being in “no-man’s-land” that I felt I might be in risk of dying. Somehow, this spurred me into the brief courage to change. Change is not comfortable – to understate this: I went through several bad days and there might be more ahead. I am still getting settled, still in what you called the gray area.
In fact I am working on artwork about it today. I’m attempting the mind-set (not in a Pollyana way) that being in-between does not mean that the future state of me will retain a sense of loss of features, loss of skills but a different set thereof. Maybe my trials and learning situations of younger years have brought me along a trail – brought me to a place where the transition can be made at all. For now that is what I am working with – “places that don’t have bridges I must jump blindly, places that are too frightening to jump I have to climb down in and walk or crawl through, and if the place is too fraught with the unknown or danger or both I must hold on, wait and see. Peace to you and me too.
Thank you for sharing that quote from your work – it’s lovely and so true.
Moving is hard and I always find myself disoriented for weeks afterwards. But those first few days are the worst. I hope you start to find a sense of familiarity and some anchor points in your new surroundings soon. It sounds like it was a much needed change and one that will eventually be for the better.
And yes, peace to both of us.
Oh my yes.
I think that in my case (I desperately hope that in my case) it is burnout and that I will eventually recover. The last few years have been one thing after another. Two cross country moves with children, nearly bleeding to death (as in another drop and I’d have been a goner), recovery from nearly bleeding to death (a blood transfusion keeps you alive, thank goodness, but it doesn’t heal your body), having my dance career axed, being bullied by neighbours (yes grownups can be bullies to), and then dealing with the breakdown that the bullying brought on. Through all of this I have realized that my responses to many of these situations have been atypical and once I realized that I was likely on the spectrum I, like you, needed confirmation. And then my cat died.
Now after having been diagnosed myself, my husband and I are realizing that our younger son is likely on the spectrum as well and, in addition to this, our older son is struggling with a fairly severe learning disability. So far it looks like ADHD inattentive sub-type and dyslexia. An assessment has been booked.
But I have become less and less articulate through all of this and my brain is not as nimble as it used to be. I lose my words. I’m having trouble writing and writing is one of my favourite special interests. The things that you have complained about, the missing words and the difficulty articulating and interpreting long and complex ideas, is something that I’ve been struggling with too. I look at my row of big binders on my shelf and I feel the edge of the kind of sadness that I’ve felt in the past every time I’ve had to quit dancing. I know that this sounds dire but it always feels like a part of my soul has been torn away. Dance is such a fickle world but writing…? surely nothing could take that away… right? But still… I always come to a point where I don’t feel so torn up over the dancing anymore. Maybe I’ll be okay if I can’t write my stories anymore.
I wonder if maybe writing when my kids are obviously in need of extra help is a bad idea anyway. I’ll be the first to admit that I am a self absorbed bitch when I am in the throes of a novel. But it makes me feel so good… Maybe it’s just burnout.
I completely understand what you mean about those losses of dance and of writing. It may sound dire to others but it is like losing a piece of your soul when something you’re passionate about suddenly goes away. I had a similar experience in my early 30s when I wrecked my knee and had to quit martial arts, which was both a long time (17 year) special interest and the way I was making a living. It was a huge huge life change and one I though I’d never recover from, though I eventually did. I still miss it at times, but 15 years is a lot of time to heal and thankfully I found new passions that were similar in intensity (bless the aspie brain and its mysterious way of latching on to things).
It does sound like you may be in a burnout phase after so many stress events and changes. You’re right about your kids needing your support and attention but it’s also important for us to take care of and nurture ourselves to whatever degree we can. Taking time for writing if it makes you feel better can be a way of indirectly helping your family. I hope things start looking up for you and your boys soon.
Thank you for understanding.
I’ve been indulging in my penchant for English murder mysteries lately and decided only to write on Saturdays when I have the house to myself for five hours straight (while my men are at aikido) in case it in is in part just my executive function/distraction filter that is exhausted. Haven’t been at it long enough to see if it will work but got Dragon going on my computer because my typing has gotten even slower (at this point my slow speech is an improvement). Looking forward to giving it a try tomorrow.
And I do enjoy my aspie brain and it’s ability to latch onto things (although the asbestos obsession was a bit annoying to my family 🙂 ).
Every time I get the flu, my nervous system goes crazy. It probably reacts to the inflammation. The symptoms usually appear a few weeks after I’m done with the flu. One year I got horrible migraines, had to watch TV with sunglasses on, and couldn’t walk a straight line. It took many many months to go back to normal.
A couple of years ago, I couldn’t add small numbers (like 3+6), couldn’t remember words, I would say one word instead of another (‘furniture’ instead of ‘fashion’, ‘bus’ instead of ‘plane’, etc.), I would mess up the letters in a word (‘vimatins’ instead of ‘vitamins’, ‘ephelant’ instead of ‘elephant’…) among many other neurological symptoms, lots of them related to language.
Time fixed most of the problems, but not everything is back to normal. Whatever is left doesn’t bother me all that much anymore, I got used to it.
There’s so much uncharted territory when it comes to neurology. I have Asperger’s and I’m almost done with med school. I’ve had access to the best docs in my country, both as colleagues, teachers and carers…they can’t help when there isn’t enough research to identify the problem. I’m good with patterns and, in my case, I saw the connection between the flu and neurological symptoms. My point is that maybe something triggered this problem in you, either related to inflammation or hormones. It’s most likely short-term, but you should be prepared for some tiny ‘scars’.
When something’s wrong with you, you desperately need an answer, sometimes even more than treatment. When there is no answer, you keep on searching endlessly, which sucks and can lead to depression. I’ve seen this in myself and patients I came in contact with. You know your body best, so maybe you can try and track down some patterns in your health and behavior and come up with a most likely answer.
Wow, thank you for this comment. It’s incredibly reassuring to hear that you experienced something so similar and that it eventually cleared up, mostly. I’d be fine with residual scars if most of this went away. I’m very much hoping it’s hormonal because I’m a few (4?) years into perimenopause and can trace the onset of the language symptoms back about 18 months, though the language symptoms have been more of a gradual linear deterioration vs. the wild ups and downs of the other symptoms. The doctors I’ve talked to said it was unlikely but I think there’s so little research or even knowledge about how autism and menopausal changes interact that who knows, right?
I just read about a conference on women and girls with autism, and it specifically mentioned menopause in the description. Here’s a link to the description: http://www.autism.org.uk/news-and-events/nas-conferences/previous-conferences/2013/women-and-girls-on-the-autism-spectrum-2013.aspx
I don’t know if this is any use to you but maybe you can find links to research or people who are interested in this topic. I’m sure I also read a call for older autistic people to take part in a study of ageing. I can’t remember where the study is but I’m sure I saw it in the national autistic society magazine or website.
Thank you for the link. I’ll poke around and see if I can find any more information from the conference to see if the speakers have published anything on menopause. Eventually someone will have to research it I suppose.
Liminal is a great word – even if it isn’t a great place to be. I don’t see why your symptoms couldn’t be menopause related – memory problems are a widely recognised symptom I think.
When I had my kids, I lost my ability to read books for about 8 years. This was a big deal as I was previously an avid reader and reading was a major source of relaxation and recharging for me. I don’t know if it was never having an uninterrupted 10 minutes to myself, or too much else competing for my attention, or some sort of hormonal/baby brain effect, but I couldn’t muster the concentration to read even “light” novels. I did wonder if I would ever read for pleasure again. At some point I regained my powers of concentration and I’m back to my normal book a week or more. So these things can change and change back. Really hoping menopause won’t have the same effect.
It does sound like you have had a busy year with moving, publishing, etc, so maybe all those things have just used up bandwidth.
I’ve really been missing the joy that I used to find in reading so I can totally sympathize with what you went through. It isn’t so much concentration for me but that words no longer have any meaning. It’s a bit like when you’re sick and all food just tastes bland, like eating cardboard or something.
I’m very much hoping for this to be temporary, even if temporary means “several years long”. 🙂
I really needed to read this. I’m at my own sort of liminal space right now, and this is such a helpful reminder. It’s okay to be where I’m at. Thank you.
I’m glad you found it helpful. Seems like many of us are in an in-between place right now.
I really admire how you’re approaching this. I don’t want to devalue how difficult and painful this is/was/will be for you some/most/all of the time (choose wording as you feel appropriate), but I would like to share my experience of you and your writing.
Your blog was the first one I found when I really started investigating autism. Your book got me through my diagnosis and that whole liminal space in my life. So, know that I have always respected and admired you as a writer, and I continue to learn from your old posts.
Your blog lately, in the last few months I mean, has been perhaps even more important for me. If I find your writing changing slightly, it’s in a way that I feel more connected with. I look forward to your posts these days so much because it feels like every single word you write is coming from the core of who you are. It’s almost like knowing that the words aren’t flowing perfectly naturally from your fingers makes me treasure them so much more. Like I know that each one is deliberate and well-chosen, and that you are not wasting words on unimportant thoughts.
Again, I’ve always loved your writing, and I really don’t mean to diminish your experience. I just really want you to know that for me, as some blogs in this community feel increasingly more hostile and unsafe (whether or not that is reasonable or justified to feel), posts like this from you are really thought-provoking, encouraging, and refreshingly genuine.
So thank you.
Oh gosh, I nearly cried when I read this. I don’t think what you said is devaluing or anything even remotely like that. It’s actually really validating and made me feel like the effort it’s taking to continue blogging is worthwhile. You’re so right about not having words to spare and that each post is hard won and important to me. Thank you for getting it and for saying this. And I know what you mean about needing a safe space. My online interactions have shrunken down to mostly just here because there is so much “out there” that feels unsafe and hostile and like it’s going to suck up so much more than I have to give right now.
You’ve described exactly how I feel about this blog, I couldn’t do it so well.
Cynthia that’s exactly it, each word counts for more and I understand that and appreciate it all the more because of it. Also you’re blog is never confrontational and never leaves me feeling uncomfortable (as some others unfortunately do), but always encourages me to think for myself and leaves me feeling good/positive/better equipped. Thank you.
Thank you. I do want this to be a safe, welcoming space and try hard to make that happen, even when I talk about difficult subjects. ❤
Reblogged this on Geeky But Not Freaky and commented:
Very nice blog!
Yup, I feel this.
Peace of mind was also my #1 reason for seeking a diagnosis. I always object when people say “the only real reason you need one is if you need to seek services.”
Nope. I couldn’t deal with living in belief of two different and contradictory things about my life simultaneously anymore.
I hope the verbal issues either find some kind of resolution, or…something…before long. : P Mel Baggs has a tumblr post somewhere about autism meaning that she thinks her brain *requires* long periods of dormancy or “regression” before blooming or reconfiguring abilities again.
I’ve been dealing with things maybe kind of similar but not as severe-sounding myself recently, and I was really getting to be over it, when it seemed to let go a little bit. I still feel like my formal writing is not up to snuff lately, but I had a dream one night about how easy it would be to learn sign language right now. After years and years of feeling like it would just be too hard. So I just got started, and my subconscious seems to have been right; I’m not fast at picking it up, but my brain seems to really *like* it.
“I couldn’t deal with living in belief of two different and contradictory things about my life simultaneously anymore.”
Oh, so much this.
I’ve read Mel Baggs’s post about her experiences, yeah. I’m very much hoping this is some sort of brain reset. I’ve even resigned myself to being fine with a multi-year regression type of thing if it would eventually go away. Because the alternative is pretty sucky sounding. 🙂
My husband and I started learning ASL earlier this year and I enjoyed it a lot but we didn’t have the discipline to stick with it. Are you taking a formal class or learning some other way?
No, no formal class–my schedule is too erratic, and I can’t really afford it. I’ve been learning off of YouTube videos. The channel “My Smart Hands,” which is designed for teaching little kids, is one I like a lot for friendliness and simplicity and a variety of basic useful signs. My goal isn’t necessarily fluency, but just seeing how much I can do.
I tried with Youtube videos too but i think they got too complex too quickly because it was a college level course. I’m going to check these out and give it another try. We could really use some basic communication signs for when verbal words are hard.
Oh, and I wrote my senior thesis project on the connection between social stigma towards artists and liminal spaces/states of being. It’s kind of a favorite subject of mine. : )
That’s so cool. It’s an endlessly fascinating topic to me too.